Saturday, November 22, 2008

Feeling great, but possible fungal infection

Yes, I'm back in the hospital again. Joy. But that day that I got admitted was pure hell and I felt so miserable that I didn't really care about going back in. The alternative was to go back home and dread the thermometer reading that reads a fever, which means paging the oncologist at whatever hour of the night to get sent to the E.R. again, which is way more of a hassle than just being able to meander in to the hospital and go up to your room.

The day I got admitted started off fine, and my dad had just finished pushing the antibiotics through my PICC line and taking care of all the other nurse duties that Johanna normally does. We left for my doctor visit, but by the time I got there I started feeling really tired. Each time I stood up to walk somewhere, I needed to find the nearest chair as soon as possible. I didn't realize this was how you feel when you started feeling faint, I just thought I was really tired. So it wasn't until I got a chest x-ray and actually fainted that I realized, OK, this is way not cool. One minute I was standing in front of the x-ray machine, then I remember taking a deep breath, and then the next feeling I had is waking up from a refreshing nap. Except that I was on the floor of the x-ray room, being held by the wonderful lab woman who somehow managed to catch me and guide me down. I was like, "what happened? did I fall?" I remember the confusion of that moment so vividly. I didn't know if 1 second had passed or 20 minutes. The technician was awesome. She even brought a pillow and a cold washcloth to put on my forehead and let me lie on the floor for a bit. So here I am in the x-ray room, lying on the concrete floor under an x-ray table thinking "this sucks." I managed to get back to the doctor's office and then immediately got the shaking chills, which is never a fun feeling to have, even less so the way I was feeling. After telling my oncologist about the fainting and the shaking chills, he shook his head and was like, "That's it, you're going in today. Sorry." It was good that we did since I had fevers all day, then more shaking chills for 2 hours that night, then my fever spiked to 103.2. What a ride. Having that high of a fever is awful, since you start feeling delirious and your mind races thinking about all kinds of crazy things. Sleeping is impossible.

Anyway, what had happened was that my hematocrit levels (the percentage of red, oxygen-carrying blood cells) had dropped precipitously from 24% to 20% in just a few hours. A normal range is between 41% and 50%. My poor heart was racing all day just trying to keep me going. Even sitting down I couldn't get my heart rate below 120, and normally it's 60. So I got a couple units of red blood the next day and felt miraculously better a few hours later. It was unbelievable how better I felt. Today I'm feeling the best I've felt in 3 weeks. I am still amazed by the body and how easily it can adapt.

So the latest news is that after getting a CAT scan (a fun machine where you ride back and forth through a donut), they found what looks like a fungal infection in the top right lung. Technically it's called aspergillosis, and is pretty serious and typically only found in immunocompromised people. In fact, most sites I found online described it as such:

Invasive aspergillosis generally affects people who have compromised immune systems, such as people who have had a bone marrow transplant or solid organ transplant, people who are taking high doses of corticosteroids, and people getting chemotherapy for cancers such as leukemia.

Hm, sounds like someone I know. Aspergillosis is caused by breathing in aspergillus spores, a fungus (mold) that is pretty much everywhere in the environment. Everyone breathes in aspergillus spores, but your immune system easily deals with it. It's pretty much impossible to avoid. It's even in some foods and spices. But if your immune system is gone, then it's a different story. Now that I'm seeing what happens without an immune system, it's pretty scary, especially after reading about all the different infections I can expect to get after my bone marrow transplant. We're going to have to be so, so careful, even up to 3 months after the transplant. I count myself pretty lucky to have gone with such a poor immune system for so long with only that nasty ear infection.

So I'll be on more antibiotics (I'm on 3 right now) if it does turn out to be aspergillosis. Hopefully the antibiotics, along with my recovering immune system, will wipe it out. The tricky thing is that it has to be 100% gone before I go into a transplant or it can be fatal. Seriously. The fungus can spread to all organs of your body, including your brain. Sounds like an episode on House. But the good news is that I only had a low-grade fever last night and I haven't had a fever all day today. So hopefully I'm already on the mend. But keep your fingers crossed.

In other news, my platelets are now at 186!!! This is in the *normal* range folks. I've been as low as 6, so this is awesome. I can already tell the difference in the amount of time it takes for a needle poke to stop bleeding. It could take 10 to 20 minutes, now it's less than a minute sometimes. Cool!

Oh, and they removed my PICC line to rule out any infections, which is sort of cool, except that now they have to run IV fluids through a peripheral line, and I've gone through 3 in the last 2 days since they tend to clot easily (especially with all my platelets). Ugh. I kind of miss my PICC line. I had it for 2 months.

That's it for now. If all goes well I'll be going home on Monday. Can't wait.

6 comments:

That's an amazing platelet count, Steve! What's next: red blood cells? And surely the white blood cells can't lag too far behind. Will you get to enjoy all your platelets for a while, or are they planning to hit you with more chemo sometime soon? (And out of curiosity, did you really write this whole thing, or was it another ghost writer? If you can blog like this, just days after shaking chills and a fainting spell ... sweet Jesus. I don't even want to think about what you're going to do once you're back to full health ...)

Ha ha yes it's me :) I feel really great. Johanna is actually concerned that if I've been able to survive so long at such low levels, that when I do return to normal I'll be bouncing off the walls and doing headstands in the street.

Yep, white blood cells are also way up, at 3.2 at one point with an ANC of 2.4! Unfortunately I won't be able to enjoy it for long, since once I've recovered we'll start the transplant process again and *pow*. But at least I have an idea of what to expect :)

I don't know where you find the energy to write these, but they're great for all of us "on the outside" :) Congratulations on your platelet count! If you need a crash course on how to properly faint in public, I can help you out. Unfortunately I have quite a bit of experience in this department.

btw, on fainting, i have way too much experience with it. when i was a kid i would faint at the sight of blood and i got hurt pretty often, climbing trees and such. it was almost "oh...there he goes again. get some water and wake him up."

lame, i know. i got it from my mom who can go down if we just talk about blood. hehe.

and i still have some of it. when we were having our second kid, there was R on the operating table all cut up (c-section) and she is happy and smiling and then she looks at me sitting beside her and asks "are you ok? you look spaced out." and then the nurse comes and takes me to the side and makes me sit down and breathe deep, etc. while everyone else including R are having a good chuckle.

About Me

About this Blog

On June 5th, 2008 I was diagnosed with a blood disorder called Myelodysplastic Syndrome (MDS). What this means is that my bone marrow is unable to produce enough red blood cells, white blood cells or platelets. On January 27th, 2009 I had a bone marrow transplant, the only known option that offers a full chance of a cure.

I'm using this blog to help keep friends and family up to date, and also as a way for me to focus my thoughts and understand this disease so that I can power through it and beat it. Thanks to everyone for all the support. Your comments really cheer me up. I read them all!